It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 09-21-2005, 08:47 AM   #1
Senior Member
(female)
 
Join Date: Aug 2004
Posts: 159
starlet32079 HB User
Lupus Anticoagulant...

was just curious how many of you have tested pos for this?

Thanks,
Starlet

 
Sponsors Lightbulb
   
Old 09-21-2005, 03:17 PM   #2
Junior Member
(male)
 
Join Date: Jul 2005
Posts: 11
ms1313 HB User
Re: Lupus Anticoagulant...

me....I have Antiphospholipid Antibody Syndrome

 
Sponsors Lightbulb
   
Old 09-21-2005, 03:49 PM   #3
Senior Veteran
(female)
 
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Re: Lupus Anticoagulant...

Hello starlet,

I too have APS/Hughes Syndrome.

Take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 09-21-2005 at 03:50 PM.

 
Old 09-21-2005, 06:39 PM   #4
Junior Member
(female)
 
Join Date: Aug 2005
Posts: 37
NCWHS HB User
Re: Lupus Anticoagulant...

I like those who have posted before me have tested Pos. also. Not sure what it means though. This is all very new to me.

 
Old 09-21-2005, 06:58 PM   #5
Senior Veteran
(female)
 
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Re: Lupus Anticoagulant...

Hiya NC,

If you test positive for APS it means that you have what is referred to as "sticky blood". Here is a brief explanation for you:-

Antiphospholipid antibodies

These tests are associated with the important problem of 'sticky blood'. Patients with high levels of antiphospholipid antibodies have an increased tendency to clotting both in the veins and arteries, and in pregnant women with these antibodies there is a risk of thrombosis of the placenta leading to miscarriage. It is now recognised that many women with recurrent miscarriages have antiphospholipid antibodies and that successful pregnancies are possible when the patient with sticky blood is treated either with aspirin or with an anticoagulant.

I hope this helps you a little NC. There is more data on it obviously, but I find that too much information at once can overwhelm us. Any more questions, come back.

Take care.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
Old 09-21-2005, 07:57 PM   #6
Veteran
(female)
 
Join Date: Apr 2005
Posts: 311
life_is_good HB User
Re: Lupus Anticoagulant...

I also have the lupus anticoagulant. I'll try to answer any questions you may have about it.

~sam~

 
Old 09-22-2005, 12:50 AM   #7
Member
(female)
 
Join Date: Jul 2005
Posts: 99
jusbreatheOM HB User
Re: Lupus Anticoagulant...

Hi goldenwings
starlet
NC

I got tested for it last week, along with anti-ro, ssb, ssa, I think the whole lupus panel again. I find out Friday the results. I haven't tested positive for it yet, but my father has sticky blood . I am hoping that is one thing I did not inherit, I got everything else., lol. I always had lots of clots but at the same time during the year, odd huh?
felicia
I will post after I go to my dr appt on Friday. Hope everyone is well today.

 
Old 09-22-2005, 06:09 AM   #8
Senior Veteran
(female)
 
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Re: Lupus Anticoagulant...

Hiya jus,

Good to hear from you. How are you doing? I do hope the results get things sorted for you. I know you already probably know this but just to give you this bit of information in connection with your Father having sticky blood and you being tested for it too.

Is Hughes Syndrome hereditary, can my children be tested?

It is suspected that people inherit something from their parents that predisposes them to develop Hughes Syndrome. They are not necessarily pre-destined to develop Hughes Syndrome, but they may be more susceptible. Relatives of Hughes Syndrome patients have an approximately 5-12% greater tendency to get the disease if family members have it.


If you have Lupus, does that mean you also have Hughes?

No, 1 in 5 patients with Lupus have “Sticky Blood” and an increased risk of clotting. The reverse however, does NOT apply- MOST people with Hughes Syndrome do NOT have Lupus.

You most probably know this anyway, but it might be of intrest to other members.

Take care and best wishes for your results on Friday.

goldenwings
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
Old 09-22-2005, 11:09 AM   #9
Senior Member
(female)
 
Join Date: Aug 2004
Posts: 159
starlet32079 HB User
Re: Lupus Anticoagulant...

Hey, thanks for all of the replies. The reason that I ask this question is because I am a 26 yr old female and was just released from the hospital ( 2 1/2 weeks). I had unexplained pelvic, left leg and chest pain for about 3-4 weeks and had been to the doc and to the urgent care clinic and was sent home each time until the last time I went to see a doc and I showed her the discoloration of my left leg she sent me right away to the Emergency room.
I found out my first stay that I had about 12 pulmonary emboli, 5 clots in my lower left abdominal area and 3 clots near and in my left leg. They found out I have May-Thurner Syndrome. I was told that I was very lucky I came to the ER because I couled have died. I had surgery right away to break up the clots and to put a stent in to repain my congenital defect. 1 1/2 days after I left the hospital for that problem I was right back in the ER with pain in my leg that I can only say hurt more than having my two daughters. That is when they found out that I tested Pos for the Lupus anticoagulant.
What exactly does this mean for me? I know I have to have my CFX level checked twice a week for 1 year and have to take Warfarin for 1 year and maybe even for the rest of my life. I know that it means my blood is more likley to clot but is there a name for this condition? The blood doctor told me that this condition could go away. Is this True? Any info would be great. I have had a neg ANA test for lupus but you all are so wonderful at educating people I knew I could ask for you help. Thank you all for suggestions and comments you have.

Starlet

 
Old 09-22-2005, 02:23 PM   #10
Senior Member
(female)
 
Join Date: Aug 2004
Posts: 159
starlet32079 HB User
Re: Lupus Anticoagulant...

I know my last post was kind of long but Any comments are greatly appreciated. Thank you all.

Starlet

 
Old 09-22-2005, 05:40 PM   #11
Veteran
(female)
 
Join Date: Apr 2005
Posts: 311
life_is_good HB User
Re: Lupus Anticoagulant...

Starlet,
Did they call it antiphospholipid antibody syndrome? I have this clotting disorder, but your case is much more severe. Please see the sticky post at the beginning, it will explain it a little better. I'm assuming you're on lifelong coumadin?

~sam~

 
Old 09-22-2005, 07:59 PM   #12
Senior Member
(female)
 
Join Date: Aug 2004
Posts: 159
starlet32079 HB User
Re: Lupus Anticoagulant...

Sam,
The doctors didn't have a name for it. They just told me that I tested posotive for Lupus Anticoagulant. That is why I am so confused about it. They are going to have me on warfarin for 1 year and then retest for Lupus anticoagulant and if it is posotive again they will treat me with warfarin for the rest of my life.
I just want to find out as much as I can because I am so scared. I pray at night before I go to bed now because I am afraid it will happen again and I will die. I am to young ( 26) and have two daughters 5 yrs and 18 months, And a husband. I don't ever want to be told again that I could die.
I didn't get to ask my doc about this condition because I didn't know it was one until I decided to post here. I have many of the symtoms that come with Hughes syndrome. except for the miscarrages, I have never lost a pregnancy that I know about. But the rest of the stuff like migraines, memory loss, movement problems, family has a history of clots after surgery but not like mine.
I am just really scared. Thank you for posting back. Any info anyone has would be great.

Thank you,
Starlet

 
Old 09-23-2005, 03:36 AM   #13
Senior Veteran
(female)
 
Join Date: Nov 2004
Location: UK
Posts: 1,567
goldenwings HB User
Re: Lupus Anticoagulant...

Hiya again,

I know you are confused and scared, with the correct help and medication things can be "controlled". Now just a little more information to back up the theory that not all patients have the same symptoms i.e. you mention not having miscarriages.

Does it mean I will always miscarry?

No, fifteen per cent of women with three or more consecutive miscarriages have positive antiphospholipid syndrome tests. There are patients with antiphospholipid syndrome who have successful pregnancies without treatment, though there is a higher risk of complications towards the end of pregnancy, including pre-eclampsia, intrauterine growth retardation (slowing down of the baby's growth in the uterus), and premature delivery.

What are the aCL and LA Tests?

These are the two blood tests that are used to diagnose Hughes Syndrome.
‘aCL’ stands for anticardiolipin

‘LA’ stands for Lupus anticoagulant (an extremely confusing name - and not a test for Lupus)


Do all Hughes patients have the same symptoms?

No. The diversity of symptoms is wide and can include headaches, flashing lights, giddiness, unsteady gait, cold circulation, and so on - or, just to make life more difficult - sometimes none of the above.
The hope is that with increasing recognition of Hughes Syndrome by physicians and patients worldwide, more widespread blood testing for Anti-phospholipid antibodies [aCL and LA] will bring many more people to the effective treatment.

Hop this helps some more.

Take care.

goldenwings



,
__________________
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

Last edited by goldenwings; 09-23-2005 at 03:37 AM.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Lupus questions princess25 Lupus 15 11-21-2009 06:55 PM
Life length of a Lupus patient conductor Lupus 6 07-22-2009 06:25 AM
Test results + Symptoms = possible Lupus? TWA1022 Lupus 2 07-05-2007 01:38 AM
Could this be lupus??????????? ventcrew Lupus 1 10-11-2006 04:01 PM
Antiphospholipid antibodies/lupus anticoagulant CircusSquirrel Lupus 6 08-25-2006 10:41 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 09:08 PM.



Site owned and operated by HealthBoards.com™
Terms of Use © 1998-2014 HealthBoards.com™ All rights reserved.
Do not copy or redistribute in any form!